Social Security Disability or SSDI User Group
Looking for advice - Do I stick this out?
About This Group:

I wanted to start this group to keep in touch with others and to help or get tips from others about SSDI since there isn't a forum for it. Where are you in the filing process? What have you learned or need to know so we can help each other through the long treacherous process.

Founded by Mom2four85 on May 16, 2011
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Looking for advice - Do I stick this out?

Hi, I posted this in another forum regarding pain meds, but feel this applies in regards to advice. So, I am copying and pasting parts from the conversation here in order to save time and space.

Hi, I just had my first appointment with my new PCP and it went terribly in more ways than one. I'm not even sure this is the right forum, except that it does involve my pain pills.

I had a wonderful PCP for a number of years who I had to switch after I revealed my depression from my miscarriage and subsequent uterine cancer/total hysterectomy (becoming barren, never having children) and her complete lack of concern/compassion. I switched to the doctor who usually cared for me in her absence and our relationship seemed wonderful; however, she became pregnant (and I was happy for her, she even let me rub her belly and showed me pictures) but then decided to leave the medical facility to practice closer TO MY HOME. I thought this was wonderful, but to my chagrin, she did not want to keep me as a patient and asked me to stay there with the male doctor (who I did not like) that cared for me during her maternity leave and who was still miles from my home.

I refused and asked for a referral from her to someone she trusted and she referred me to this new PCP, another female who is a bit older and seems just as nice. When I got there, the office was kind of lavish but I passed that off as good taste. There was no one there,   yet I had to wait for a good thirty minutes to be escorted to a room and then was informed there was one person ahead of me. I had been advised to bring my medications in their bottles for the visit, which is normal, so the nurse (I'm guessing) sat down with me and went through my med history and the medications and their use (commenting that someone as young as me shouldn't be on so many meds - a common thing I hear, many are not familiar with the health issues I've had to live with all my life).

The doc did show and she was congenial but a bit off, she kept coughing. She thought I was a smoker (I'm not). I admitted that I used to be. Turns out she was extremely sensitive and it was my fiance's cigar-smoking habit tripping her up and he doesn't even smoke around me because I have asthma!  She seemed to have my entire autobiography or something (which could be attributed to my last PCP because we had been very close) and when I'm alone at doc offices I tend to get meek so her authoritarian presence and knowledge of my past pretty much did me in. So, immediately she goes into mental health (and I do have history due to severe abuse in my childhood and early adult years) and I don't think I had a chance after that, but I'm not sure. I really am not sure if she discriminated because she didn't seem to.

She was kind, and rallied for me, almost. Unfortunately, I am trying to get SSDI and my Medicaid just notified me (after reviewing me last June) that they don't think I should have disability Medicaid anymore. She basically told me that I shouldn't be on so many meds, which I agreed with because that was one of the reasons I was there besides establishing a new PCP. She also told me I had been in the sick role too long (since about ten years old when I was sick with Scarlet Fever, and I was sick pretty much every year since, last year was the hysterectomy and I'm 35). She said I'm very intelligent (because I remember my health conditions and can pronounce the names - hello, I go to the doctor and hospital every week and have a MA in English...). So, she broke it down to lose weight (I am obese due to inability to do much physical exercise - use cane, wheelchair, etc... but I've lost 40 lbs this year with diet and minimal exercise), stop drinking (I dont drink either, not sure where this came from except for my NASH stage 1 liver disease with minor cirrhosis and drinking history but I dont drink at all now - I am clean as a frickin whistle, the drugs I do are prescribed), and that she would not fill any meds I was on but she wanted to help me. She said to keep seeing my specialists and she would help me, and by then I was in tears (and hiding it I hope), but it was clear that I had another doctor who has determined that I cannot be on disability.

First let me tell all of you something - I worked from the age of 15 until Feb of 2011. I sometimes did not work due to my health, and I ended up homeless a total of three times. I also applied for disability four times (denied - 5th time now in 2nd appeal), and for medicaid disability five times - I received it once and lost it at 19 when I was working part time and made too much money (this is 2nd time I now have it and losing it, in appeal). I went to college, yes, and earned two degrees. It took me ten years, and during those ten years I had drug addictions, went through rehabs, was in inpatient for multiple suicide attempts, dropped out twice and almost flunked out at least twice. I had to have my therapist write to a committee in order to get back in to the Master's program. I have Borderline Personality Disorder and Bipolar Disorder, along with Major Depression, moderate psoriatic arthritis from my neck to my feet,  minor psoriasis, osteo-arthritis in my knees, hips, and back, bone spurs throughout my spine and other areas, am morbidly obese (and that came after these other conditions, NOT BEFORE), PTSD, GAD, GERD, Colitis, Psychogenic Non-Epileptic Seizures, Diverticulosis, NASH, Type 2 Diabetes, constant fatigue and nausea, menopause, and these are just SOME of my diagnoses, not even all of my issues are known.

I'm not feeling sorry for myself, though sometimes I do. But I have been working a job, on my feet and in constant pain, and seen a woman who did Meth on a daily basis, come into my work to get her daily fix of cigarettes that she bought with the money she got from the government because she went to Binder & Binder and won SSDI with only a diagnosis of Depression, and I can't understand why I'm in this situation. When I do work, I have five wage garnishments waiting on me, and those are the ones who have went to court and won - there are at least two more waiting on me. Sure, think I'm irresponsible, but it was me in college with no health insurance and being sick all the time, it was me before college and after college and working a job with health insurance or under my mom's health insurance and racking up debt because of chronic health problems and the insurance companies disputing the charges because the conditions were considered pre-existing even though I never knew I had them!

I owe over 30,000 in medical bills to more than three hospitals, and that's after 70,000 of it has been written off. I am costing you and yours a lot of money, by the way, by not being covered, just as much as I would by being covered. It's a double-edged sword, I guess. I received disability medicaid when my cancer came back (spread), not when I first got it. So, I owe most of those bills for my first (and second) bout with cancer. I went through LiveStrong and as many resources I could to get help to pay it off, and you wouldn't believe how ridiculous it all is. Yet everyone sneers down their nose at me.
Try your best to stick this out to June, age and education cannot compensate for mental health issues
They are right, you are too young and educated, you can find a job even with mental health issues, get to work
2 Members voted
Tags: looking for advice, Bipolar Disorder, Borderline Personality Disorder, Severe Psoriatic Arthritis, SSDI hearing next year
(This is a post originally given by Weathergirl 21 in the other forum) I am pasting it here, sincerely - Caradia
Sep 23, 2012
To: Caradia
Hi there...

That is certainly some life story....If I understand you correctly I think I can say congrats on beating cancer two times! You don't mention that you are being treated for that now so I hope you are in remission.

You really need to be seeing either an Oncologist who deals with chronic pain, or an actual Pain Management Dr. A PCP is not trained, nor do they specialize in pain management.

Many states now have laws/regulations that unless a non PM Dr. gets additional training and certification, they are not allowed to prescribe controlled substances. That is why you would be best served by a PM to help treat the pain from all your issues and to prescribe medication, as well as use other non medicinal modalities to help your pain.

A PCP is just a Dr. to go see for an annual check up...or to see about an issue to get a referral to an actual specialist whether that be a Neurosurgeon or Orthopedic surgeon for your spine/disc issues, or a Rheumatologist for your PA...etc.

Things have changed over the years so this is why you used to get all of this from your old PCP as well as I did from my PCP 11 years ago when I first started with pain issues. But now I have a PM who handles everything.

I will say that every Dr. is going to say that working on your health/weight issues should be your number one goal.

I've had 3 fusion surgeries, many lap surgeries, knee, foot, hip surgeries, as well as active severe herniations, and a brain tumor (thankfully they think not cancer) etc. And I do 3, 10 minute walks a day, I've switched to eating all Organic (not Vegen or Vegetarian..) but everything in moderation. Limit my sugar and simple carbs....I only have a cup of coffee in the am and then only water the rest of the day. No sodas or sugary drinks..

I am friends with my PM and he has shared what it's like to be on that side of the coin. And when a patient comes in needing so many meds but is morbidly obese....they have their guard up because they "assume" that the patient doesn't want to do the hard work it takes to get healthy and they just want pills to help them.

Now...I'm NOT saying this is you...just that you need to approach any Dr. you see and tell them that you want their help to lose weight. With daily exercise....even starting at 5 or 10 minutes a well as a healthy diet, will add to your strength as well as give you energy to help your fatigue levels.

It sounds like you have acheived so much and have conquered many things....putting your health/weight loss as your top priority will help you in so many ways from pain levels, fatigue, staying healthy with your remission from cancer, your spine issue, your PA and OA...etc. Those are all magnified with being obese.. thoughts/suggestions are find a good PM and ask them to help develop a comprehensive pain management program that includes exercise, yoga/stretching, physical therapy, aqua therapy, nutritional plan, medications, etc.

All of these can be done at home and for little to no cost.

I haven't had any insurance in 6 years so I understand...I also know what it's like to be in debt.

I applied for disability back in June (first time)....and it was hard to tell if you are working now...but I've never seen someone get approved if they are currently working as that would go against saying you are totally disabled.

And yes, you need to have Drs. on your side saying that they think you are not able to work any job.

And just FYI, but if you do have to work, debt judgments that garnish your wages only run consecutively and not concurrently.

Anyway...just some thoughts....And's wonderful that you have beaten cancer...and I hope that you can find a good Dr. to help you figure out a path to take now with your heatlh issues.
20 hours
To: Weathergirl21
Thanks for the reply, and it was helpful, as well as uplifting. I do see a PMP, I also see a rheumatologist, oncologist, hepatologist, orthopedic doc/surgeon, and other specialists. The PCP is only a formality for medicaid and regular prescriptions that the other specialists don't already fulfill, although now that I think of it the specialists can fill all of the meds. I still need someone to see if I get sick, though, and I do want to lose weight, I have done so well at it so far.

I have not worked since Feb of 2011. I know if I try to work again that it will be another instance where I end up being asked to leave and once again have to go through requesting assistance, and my family and fiance don't have the resources to once again carry me on their back for the umpteenth time while I wait for the system to make up their minds and deny me. I didn't work for over two years the last time the system denied me, either. This time, though, I've lost my family's support - they have become fed up with the entire thing and I don't blame them. They can't support me forever.

My fiance and I have split up numerous times over financial issues. He pays for everything and I am just at home, usually bed-ridden or being ran to doctor appointments by a local transportation company. I am in physical therapy for lumbar instability at the moment, so hopefully I will be able to do more physically in the near future. However, Medicaid has notified me that they don't consider me disabled due to my education (Master's degree) and age (35) and they think I can work a job that requires little physical effort. They don't seem to recognize that my biggest issue is mental, which is why I always end up losing my job.

Anyways, if I end up losing Medicaid, I end up uninsured again, and my fiance cannot afford to pay for everything AND the medical bills, which means I will have to go without meds and without medical treatment. Then, I will have to wait until my SSDI hearing, which is not until June 2013, and there is a chance they will also deny me because of my age and education, even though I have not and will not have worked since Feb 2011 when I go to the hearing.

By then, though, I may be homeless or dead. This is my dilemma.

PS I don't understand what you mean by concurrent and consecutive, but when I was working, all five medical garnishments were in effect and taking a nice chunk out of every paycheck, and that is all I know besides the fact that there are two more waiting to sue when I have a job, and that I also owe federal taxes for when I worked in 2011 and could not pay so I am racking up penalty charges every month (I owed 159.00). I receive no financial assistance from anyone except room and board. I get food stamps so I can eat. I just feel that I am bringing down my family and the love of my life, and that I will lose everything if I don't try to work - but I also know that I will not be able to keep the job because I have never been able to keep any job. Unfortunately, as stated before, no one seems to think I can't work, even with all of this evidence to the contrary.

Thank you for your congrats on my beating cancer twice, I am proud of that!
I can't believe no one is saying anything. :(( Medicaid is still trying to deny my disability coverage and I am scrambling up paperwork of all my med history (over 1,000 pages) and my med list (over 20 meds), yet ever since an incident of mental discrimination at the local ER that I reported and the Surgeon General has become involved with, everything has went downhill for me. My new PCP won't help me, medicaid only approved 5 total sessions for spinal physical therapy (one of my biggest physical issues), and two other doctors are now saying nothing is physically wrong with me and to not see them again, even though I have proof that there are physical issues. I don't understand what is going on. Is it possible to be blacklisted by doctors and the health care system? I know that sounds laughable, but it doesn't seem like anyone wants to help me on that end, and all I hear now is that I need a psychiatrist, and I know that mental illness is not my only problem. Doesn't anyone have any opinion on what I should do about my issue or a vote for the poll? Something (I am feeling kinda hopeless/helpless here)?
I'm sorry I've been out sick and had a really bad week before my hearing with anxiety and insomnia.

I would keep fighting; try to hang in there and dont give up
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